Onlies

I am so tired. 

Who isn’t? 

Who isn’t tired of the current state of things? It is exhausting. Anyone that is making it through unscathed is...I don’t know. Lying to themselves perhaps. We are tired of the ugliness, the hatefulness, the divisiveness. I am so damn sick of COVID. If I never hear of it again, it would still be too soon. 

But we will. While the disease itself is going to go away one way or another, its legacy is one that will endure--we have ensured that. Too much has happened. 

I could sit here and debate national and global response, the merits of protective guidelines and facial coverings or whether that encroaches on personal freedoms, should we do more or have we gone too far in response to this virus...but that would violate my personal beliefs. The ones that say: if you are not an expert in the matter then the only thing you have to offer to the conversation are opinions and therefore utterly worthless. 

In an unprecedented time of available platforms for expressing one’s viewpoint, there are so many that feel entitled to share their two cents on every. Single. Topic. All this serves is to drown out anyone who has something worthwhile to hear, muddies the water until it feels as though there is conflict or uncertainty where none exist. A google search confined to first page results (don’t kid yourself--nobody goes to the second page) and ten minutes of perusing blurbs does not a specialist make. 

And yet. 

I can speak precisely to my experiences and my perceptions, so it is what I will do. This is for entertainment purposes only--there is certainly no expertise I could claim. 

As I sit in my bunker for what feels like the tenth year of exile, I keep seeing and hearing the same dismissive things:

“It really only kills those that have health problems anyways.”

Only. 

As a mother of two onlies, the daughter of a former only (may he rest in peace), as a person that has taught and held and befriended and loved those onlies, may I say: 

Please don’t. 

While it is true that this virus is, like most things in life, more difficult for those with chronic health conditions, the idea that it makes it...what? Okay? Less worthy of consideration? Oh, I know:

It makes it not worth the price to pay for your inconvenience. 

There are times in this that I am going to sound angry. That is because I am. All the time. I am so angry about so many things and for so many reasons. I could try and stuff that in a sugar-and-lace tone more palatable for all audiences so hackles remain safely down, but...why? Anger is an appropriate response to hurt, and it is something we have to work through like any emotion.  

I do not and never have asked for anyone’s help in keeping my daughters safe. It is my burden, Michael’s burden, to keep them healthy and alive because frankly at this point we know more than anyone on the topic. What can I say, I have a vested interest. As such, I have made the choices during this nightmare of a reality to the best of my ability, with full and intimate knowledge of what the consequences would be for us as a family, as individuals. 

If you are looking up stats and seeing the news articles, you would have surely noticed that a particularly at-risk population is those with diabetes. Not an insubstantial portion of the population. There is not a lot of research on whether it is exclusively those with Type-2 diabetes because there is a high rate of comorbidity with other mitigating factors, but I can tell you with certainty: contracting coronavirus will not be “the sniffles” or “just like the flu” for my girls. 

My onlies.

Every one of Gabriel’s classrooms since he started in the preschool program for children with disabilities at the age of three has been populated with medically fragile peers. While he himself would likely (we pray) recover if he got sick, he would unwittingly expose a classmate that would not fare as well as he. Children I have met and worked with through my time at Sugar'n'Spice, Woodson Early Childhood, and REACH were populated with some of the most beautiful, funny, vivacious, wonderful onlies you could imagine, and for every second I had them I loved them as I would my own. 

Maybe it’s a perspective issue—people don’t realize that there are so many stuffed into this box of “onlies”. In this country alone there are millions, millions of those with chronic health conditions that have been acutely aware of the precariousness of their situation and are going to considerable lengths to ensure their safety. Most are doing the best they can under the circumstances because some garbage about the economy and we gotta work to live. But they are there with their loved ones, living in more fear and doing the best they can despite the fact that all around them it is being made abundantly clear: 

They have been voluntold that they are the acceptable cannon fodder for this new threat because others can’t be bothered. 

For the most part, I shoot a bitchy look and let it roll right off of me because I got more important things to worry about, but I gotta be honest: when my rare shopping trip is sullied by a grown adult screaming and throwing a tantrum at the grocery store entrance because someone who is definitely NOT making enough to put up with your crap was told they had to enforce corporate orders for facial covering and you think that somehow infringes on your “rights”....I want to leap over there and strangle you with my freshly sanitized hands from a safe six-feet away.

That might seem harsh. Some of you may even be getting your hackles raised, arguing “Well, you don’t know, Andie. They might have a reason that they don’t want to wear a mask. Maybe they have asthma. Can’t breathe while wearing it. Maybe they have trauma that prevents it, or or hey! What if they have sensory issues? Huh? AUTISM, perhaps?!” 

In which I reply: you honestly don’t buy that, do you?

Masks are made for people to breathe through—that’s why surgeons (and surgical staff!) aren’t single use items. And a respiratory condition would only be further exacerbated by having a respiratory illness, I would imagine. But if one were truly invested, they would be able to find a mask that worked with their condition. Or heck, they could (as much as possible) limit their time in the mask and with people because they are aware of their own inability in this realm. 

As for sensory issues, autism? Honey, you can get straight outta my face with that one. You are preaching to the wrong person. Since his birth, I have had to deal with Gabriel’s sensory seeking/sensory defensive cycles, which have been disheartening and extreme. He has gotten completely buck-nakkie in the buggy at Walmart on more than one occasion whilst I had my back turned. But here’s the rub guys: we don’t let sensory issues dictate behavior. I don’t smile warmly at other grocery store patrons that are staring aghast at my son’s exposed everything and brightly explain, “oh, it’s okay—he has AUTISM!” When there is an issue with expected or appropriate behavior, we give them the tools to cope. 

For Gabe’s nudity in the store, I started with having him focus on me. I felt like a great big ol' fool but I would belt out songs at the top of my lungs because for him, it was like I was casting a magic protective spell over him. And it worked! Sure, there were people that shot me weird looks (and more than one that would join in or offer song suggestions) , but I wasn’t doing it for them. I was doing it because I knew long-term Gabe needed the tools to get through this. 

Fast forward to today, where he would rather wear a mask into the store than pants, if given the choice. But I still make him wear both. And if it came down to a “pick your battle” sort of scenario (because BEEN THERE)? I don’t take him out. 

Guys, I can’t begin to tell you how much this doo-doo storm has negatively impacted my life. Starting with the fact that I have been more or less trapped in this house with these kids since friggin' March.

Tula is missing out on critical exploration time, as well as her time with Mommy’s undivided attention. Small potatoes; she’ll be fine, but it still sucks. She is loud, screaming for attention in a house where her voice is just one of many. Emotionally it has been difficult for her. 

Emerald is scared out of her mind of getting coronavirus, to the point that she is afraid to leave the house or be around other people. Because she knows. She asked me why people weren’t taking this more seriously. I told her that a lot of people lack the imagination to know what it is like to be really, really sick or in the hospital if it hasn’t happened to them. Her perfect little face blanched so hard I thought she might pass out and she whispered, “it’s not fun”. 

Benjamin, my sweet almost-normal, healthy child is suffering, too. He is simultaneously incredibly social and very bad at human interactions. He is getting the one-two punch of isolation with a big sister that finds him annoying and a little sister he finds annoying (Gabriel is just a source of constant aggravation to him) but no friends to play with, which deprives him of the benefits of socialization. He is showing signs of stress, but he doesn’t want to go back to school because he is afraid he might accidentally make one of his siblings ill. 

For the last few months, he has been losing weight, complaining of stomach pain that leads to vomiting and eating less, and looking weak and wane. He had to start omeprazole and have a sonogram, fecal smear, and lab work done that revealed he has IBS brought on by stress. He lives in constant fear that he or his family members are going to get sick and die, and he is trying to mentally prepare himself.

And Gabriel? Oh, my Gabriel. The amount of regression—loss of progress and skill—that we have experienced in my boy is...more than I can face at the moment, to be honest. Since he was 17 months old, we have applied firm and steady pressure to help him gain skills. He’s been enrolled in multiple therapies weekly since that age, had a case manager to help direct his services, met with specialists regularly (no less than every three months), and aggressive behavioral treatment plans. Since he was three, he has been in school year-round with teams of special education specialists, building toward as much independence and self-reliance as can feasibly be attained. We have dealt with every problem behavior that has arose from fecal smearing to aggression to extreme prolonged sleeplessness to dumping (upending organizational units that hold multiple items like bookshelves, toy buckets, or jars full of pickles from the fridge so that it scatters on the floor) and triumphed over them while pushing for him to gain new skills: eating with a spoon (attained at age 7), dressing himself (pulls on clothes with stretchy waists and no fasteners, age 10), sitting and attending tasks (ongoing process, but we were up to 15 minutes regularly). He was cultivating friendships and interests and social skills, secure in a predictable routine. 

With that constant force, the indomitable will I am infamous for, we were able to achieve around three months of developmental progress per year. 

Over the last six months of this, the worst of all time lines, I have had a front row seat to the majority of that progress evaporating into thin air.

He started out after spring break begging to go back to school. He would get dressed, force his feet into whatever single shoe he located (whether it belonged to him or not), and put on his backpack to wait at the door for the bus. Heartbroken, Michael and I would try and get him distracted, get him engaged in something else. But he would just sit beside the door watching for the bus, fat tears rolling down his face.

That army we had amassed to fight for him slowly trickled away. Insurance, at least in this state, looks for any reason to deny coverage of therapies. It demanded that the sweet occupational therapist do one hour of therapy per session instead of the former half-hour, because children (especially those with autism!) are known for their long attention spans. This happened about a year or so ago, so when stuff went all sideways in this catastrophe clown car of a year, the OT was now expected to get Gabriel to attend to therapy for a full hour. Over Zoom. After a few months of struggling with this, we had to do a re-evaluation without the specialist there to administer the test—I was given a questionnaire to fill out, which was the best we could manage given the situation. They were unable to prove through the re-eval that there was progress made, and we were denied coverage. Same deal with Speech. These people we had been seeing in our homes for years that were just as crushed as us had to sign Gabe off their caseloads, with the hope that when things got back to normal we would resume services. 

We expected regression. It is inevitable, with all kids but more so with children on the spectrum. But I wasn’t prepared, emotionally or otherwise, to handle a Benjamin Button scenario play out before my eyes. 

I won’t fully recap it here because I am already in tears, but some of the highlights were: human poop intentionally decorating my walls and furniture, painted afresh every day. Aggression so unexpected and out of control that I had to wear long sleeves and pants in Texas summer because I was covered in cuts and bruises, but putting myself between them was the only thing I could do to keep him from hurting his siblings and deal with his outbursts. Literal weeks of less than two hours of sleep a night...again. Weeks worth of food dumped out on couches, carpets, blankets, floors. Butt-ass naked boy body in our vision every time we turn around. 

Despite our desperate attempts, Michael and I have sat witness to literal years worth of progress erased. Don’t get me wrong: we have faced down each of these problem behaviors and we triumphed over them once again because we are legitimate Bosses. Each time one of those special ops from his team spoke, we were right there taking notes so we would know for the future. Every single issue that arises, we will smack down like the many hands of Durga, slap slap slap slap slap. 

But it will take us actual factual years to get us back to where we started. Not to make new progress, but to re-emerge close to the state he was in at the beginning of this year. And perfect timing, too, since Gabe is creeping steadily toward puberty, a notoriously easy time for everyone involved. And it friggin sucks.

This. This is what I have sacrificed to keep my children and those around us safe. I made the right choice, hard as it was, and I would make it again. Because when we are living in the worst of times, the only thing we have is our humanity—not willfully endangering the lives of those around us feels pretty baseline. 

So shut up about the mask, would you? 

—Andie